Welcome to our Caregivers Forum. It's nice to hear from someone onthe other side, so to speak....a care-getter! :)
You've asked a great question. I am sure that our members will have different answers for you....as we all tick a bit different.
First of all Mr.McDreamy is there with you because he wants to be. He must love you very much. I am sorry that I do not know you or your condition well. I assume you require 24/7 care to some degree?
I do not have your disease. However when I was about 30 I had a severe, supposedly unsurvivable MVA. I was in the hospital for nearly six months as they fought to save my life. It left me with multiple medical issue and severe chronic pain, thankfully no head injuries. My Mr.McDreamy has been at my side for twenty years now. Any man with any sense at all would have left me long ago!! I am blessed that he didn't have any!! :)
I am also the caregiver of my 81 year old terminally ill father. He has resided with us for seven years. My Mr. McDreamy picks up my slack in dad's caregiving also. So I hope I can give you some input, maybe insight from both sides.
We have respite for my dad. That allows for dad to go into a hospital or Hospice House to provide us with up to 5 days a month of respite. Getting away from the worry and concerns is immensely important. I have only used it twice since the terminal diagnosis 19 months ago but each time I have felt rested and renewed.
Mr. McDreamy might need a night or two away. I don't know if you can get a sister or a loved one in to care for you or if the Home Health Care Agency will provide something similar to respite. McDreamy may not even want that. But certainly he may enjoy a night out with the guys, a movie or breakfast with his friends. Again I am assuming that he is there 24/7. My husband has breakfast with his friends once a week. He also goes to movies several time a month. Whatever helps him to unwind and get away. I insist.
From a caregivers point of view I can say that repeatedly reminding me of what needs to be done is so annoying. My father will tell me five times in several hours that he needs meds reordered, even though I am the one who takes care 100% of all his meds, he has never ran out and I have already ordered them. That's just one example. It's like that with every task, or every need. So trust your loved one to see that these things are done....if he is the one that is responsible for them.
It's priceless when dad simply says thank you, I love you or when he tells us that he appreciates all we do for him and that he couldn't get better care any where else.
There isn't a day that goes by that I do not tell my husband many times how much I appreciate and love him, that my life would not have any joy without him. There are things that I cannot do and he just does them. Our nights of dancing, playing co-ed softball, tent camping and all the great activities we so enjoyed togther are long gone. But that is all that is gone.
When I was very ill and recovering for years, he even helped me to and from the bathroom, comforted me when I cried in pain, held my head when I vomited and quickly retrieved meds that would help what ever medical problem I was experiencing. It wasn't just that first year. I had multiple major surgeries during the four years following the MVA and he was always there. I still have trips to ER, urgent physician appointments or pain flares when I can barely get out of bed. He has always rubbed my back in the middle of the night and promised his undying love.
You can't repay those kinds of things. How do you repay someone for loving you to the degree that our McDreamy's love us? You simply love them back the best you know how. And loving comes so easy. Be attentive to their needs. Sometimes I get so caught up in my pain and carrying for my dad that at the end of the day I realize I have neglected my McDreamy. I am immediately ashamed of my selfishness. So I tell him.
I never want to take him for granted. I tell him exactly how I feel. Open and frequent communication has been a effective building block in our relationship. My heart still skips when he walks into a room & he says he feels the same. We laugh whenever the occasion arises. Often we laugh over silly things that no one else sees the humor in & that makes us laugh harder. I don't know where this love & dedication came from. We are so very blessed. You must have the same or you would not have your McDreamy.
I sincerely hope that my rambling has not bored you. And I hope that something I have said may have offered you at least some ideas or information. Please visit us often. We value all input. We all learn from one another...and support is critical.
My Best to You and Your Wonderful Mr. McDreamy!
Thank you so much for your thoughtful, kind words. You definitely hit this one on the nose in several respects. It's comforting to know there are other couples out there doing this same thing and getting along just as we do (your description of seeing the humor in things that other people don't "get" is uncanny).
My care is nearly 24/7, as you guessed. I can currently be left alone for a few hours at a time between caregiver "shifts," but never can leave the house unattended (even to go into my own yard), and require assistance for almost all activities of daily living (bathing, meals, meds, etc.). I have home health care for the hours that my Mr. McDreamy is at work, which leaves him in charge as soon as he walks back in the door. One smart thing we finally did (though we resisted for a while, seeing it as an invasion of our available private time together) was to extend my home health care to seven days a week. This frees him up to take overtime at work whenever he wants to without making special arrangements for me, and to do things for himself on his days off if he feels like it. I think it ended up being a really good choice, even though it was a hard decision to make.
My mother and her husband and my sister and her husband also take turns taking me out of town to stay in their respective homes for little "vacations" to spend time with family and give Mr. McDreamy a break a couple of times a year. The funny thing is, he says he misses me when I'm gone. I really couldn't be luckier. I just need to make sure he KNOWS that I think he's the cat's meow, and I realize that it's not everyday you find someone who will stick it out in a relationship under as much stress as ours has had to endure.
Thanks again for your input on this. I think the biggest thing I probably need to work on is biting my tongue if something he does/gets for me isn't *exactly* how I want it. I'm never that picky with my home health aides, and I think I just have a tendency to be more blunt with him because I'm more comfortable with him ... what's that saying about saving the worst of ourselves for the ones we love? I owe it to him to be *at least* as respectful as I am with my aides, and show a little tact.
See you around,
Sorry Heiferly, I didn't see your comment till now. As you probably know my dad passed became very ill the night of the 10th and passed away on the 13th.I've had little time for anything but grieving and doing the things I must do over these last several weeks.
I hope you are still monitoring this site and will let us know how you are doing.
You are so right. We often expect more and say so to those that we love. My grandmother use to say we should be as kind to those that we love as we are to guests in our home. It's easy to say but not always easy to do.
I am glad that you have some mini-vacations. I am sure Mr McDreamy misses you when you are gone. Even when I was away those two short times from my dad who I was a 24/7 caregiver for, I missed him. And he was not dad, not Mr. McDreamy.
I'll hope that you will keep in touch and let us know how you are doing. If you care to share the ways you have found to to show your appreciation I am sure we would be interested. We all learn from one another.
My Best to You,
My deepest sympathies on your loss. My father passed away from severe illness when I was 12 years old, so I do empathize with what it is like to lose a parent; even when we know that in a way it is a relief of their suffering from illness, it is still so hard. I hope you find solace in the time you were able to spend with him before he passed. My thoughts are with you and your family.
My guilt over being a "care receiver" in my relationship finally bubbled over ... more like blew up ... recently. MrMcDreamy made an innocent enough comment about his disappointment about the fact that what he'd hoped would be a temporary illness has now proven to be something that forces him to give up some of the hopes/dreams he had for "us." Instead of realizing it was an attempt to reach out and allow us to grieve together about the way WE've had to revamp OUR future together in light of my illness, my defense hackles went up and I took it as him blaming ME for my illness messing up HIS plans for the rest of his life. I'll leave to your imagine the childish tantrum that ensued; fortunately, it was extremely short-lived and in under five minutes we managed to segue into the conversation he meant to have in the first place.
Since having that chance to open up more about our feelings of guilt, grief, sadness, frustration, etc., I really think we've both been communicating better. I think we go through waxing and waning periods where we communicate well for a while, then start to shut down again and stuff our feelings away, each trying not to "rock the boat." Hopefully we'll get better at this as time goes by.
As for ways that I show my appreciation, I guess you could say I'm a bit corny at times, but he seems to like it nonetheless. (Thank goodness!) Before becoming disabled, I taught young special needs children, and I don't think you could beat the teacher out of me. So I tend to do lots of crafty/homemade things. I made an arrangement of 3D oragami flowers and put it in a vase for him once; I know those went over well because he put all but one of them in our scrapbook and that last one he keeps on the fireplace mantle in the master bedroom! :-D Once I took about 30 of these posterboard stars that are meant to decorate school bulletin boards, and put personal messages/inside jokes/little drawings/etc. on the back of each one, numbered them (so it'd be obvious if any were missing), and hid them throughout the house for him to randomly find.
His favorite gift he's ever gotten from me is a stuffed animal that I sewed from scratch using a pattern that I made myself. There's a great story behind that one, the poor thing. I'm a horrible perfectionist, possibly because I have OCD, or maybe just a personality quirk--but I had checked and re-checked this pattern a million times over. Well, I was plugging away making the stuffed animal and I got all the legs sewn and stuffed and started attaching them to the body fabric. I had all four attached before I realized that stitching them pointing all in the same direction was completely irrational; one leg and one "arm" were now on the outside of the body, and when I went to turn it rightside out, the other leg and "arm" were on the INSIDE!!! Honestly, it's one of the deepest belly laughs I've had in my life. I decided to keep the mistake as sort of a metaphor for my best intentions, but not always perfect outcomes, in showing my love for my SO. To this day, you can see the seam allowances hanging out where the two missing limbs should be, and if you squeeze the body you can feel the phantom limbs buried inside. MrMcDreamy LOVES that little stuffed guy and keeps him in a place of prominence on the bed. :-p
So yeah, that's the kind of things I do to show my appreciation--lots of little notes, etc. Plus I give him back massages when I'm able, as he has back problems and is often in pain after a long day at work. I also have a general policy of letting him have "the clicker" when he gets home from work, as I can watch what I want during the day and he needs to unwind when he has the chance. I'm happy just to spend that quality time with him anyway, regardless of what's on the tube.
I did get a chance recently to switch roles with him briefly (which does happen on *rare* occasion): poor bugger dropped a 25 lb. weight on his foot/ankle at the gym!! So I sat up all night long with him in the emergency department, this time in the odd position of him being the one in the bed and me in the uncomfortable chair! Thankfully, the x-rays came back negative for any broken bones so he got to leave with just a tetanus shot and some pain medication ... well, that and the same nasty swelling he came in with. :-( It was good to take care of him for once though!! I even bought him breakfast at Bob Evans when the hospital set us free at the crack of dawn before we went home to crash in bed, just like he does for me whenever we end up pulling an all-nighter like that. :-D
Oh, and the last thing I do that I forgot to mention that he really likes is that I do scrapbooks and DVDs of our memories together; he loves those. When he bought the historic house we live in now, I made a special scrapbook just for the house with before and after pictures for all the restoration projects we're doing. Well, we don't have all the "afters" yet, but you know what I mean. I also put some of the history of the house in there, and general history facts from the year that our house was built--it's really neat and he was impressed when I gave it to him! I've made several DVDs for us too, combining dated quotes from emails and notes we've sent/given to each other with pictures of us and setting them to music. I even choreographed a music video (to a love song) featuring me, our dogs, and the aforementioned stuffed animal once and put that on one of the DVDs ... you have no idea how hard it actually is to get your dogs to roll over on command across "cue cards" of song lyrics while you videotape it until you actually try it, LOL. Also, feeding them peanut butter to make it look like they are talking/singing *sounds* like it will work, but it sure didn't work well on my dogs! Nonetheless, he always appreciates all the time and effort I put into these things and I can tell he really loves and cherishes the results, even if they're less than professional.
Sorry for blabbing on so long. I hope there's something of interest to someone in there.
Thank you for sharing with us. I enjoyed reading every word.
I am so glad that you had that chat. You and your SO are going through the stages of the grieving process, which is normal when an injury or illness changes our lives.
This may be more suited for your Forum but this is what I read, "Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing that keeps some of these individuals going." Is that a truthful paragraph?
Your relationship is not different from other relationships. I think we all wax and wane in our communication. No relationship is perfect. We all have our ups and downs, moments that we are closer and feel more connected than other moments. So it sounds like you are doing well.
And it appears you have been successful in showing your appreciation. Keep in touch. It's always great to hear from you.
My Best to You,